Elijah

Elijah, aged 3, is from Pontypridd in South Wales.

Elijah was diagnosed with XIAP deficiency, a rare inherited immune disorder, following a life-threatening episode of HLH (haemophagocytic lymphohistiocytosis).

Since Elijah was born, he had been prone to constant recurring infections. He would often come out in rashes with high temperatures and seemed to suffer far more than expected with every illness. We always felt there was something not quite right in how unwell he became, even with something as simple as a cold. However, time and time again, we were told it was “just a viral infection.”

Even before taking him to the hospital, we often felt like we already knew what we would be told: “He’s got a virus”. However, Elijah even developed sepsis at just 1 year old, but we were still left without any clear answers. There were many moments where we felt dismissed and unheard.

In November 2025, just after his 3rd birthday, Elijah became critically unwell. He developed a widespread rash, high temperature, and a swollen stomach and spleen. It was an incredibly uncertain and frightening time. That same week, he was diagnosed with HLH.

Further genetic testing revealed that the underlying cause of this was XIAP deficiency, with the only curative treatment being a stem cell transplant.

In February 2025, we travelled to the Great North Children’s Hospital in Newcastle, Ward 3, for Elijah’s life-saving bone marrow transplant.

The first day of admission to Ward 3 felt incredibly scary, nerve-racking, and overwhelming. The isolation, along with all the rules and restrictions, was difficult to take in. But within a few days, it became our new normal, and Elijah adapted so quickly, which made things much easier for us as parents.

Elijah’s constant singing, his energy, and his funny personality have carried us through the hardest days.

The smallest milestones have meant everything to us. Watching his neutrophils increase, moving from strict isolation to “purple isolation,” and eventually being able to go for short walks outside felt incredible after weeks of being confined. Every small step forward has felt like a huge achievement and a massive win. 

Connecting with other families going through, or who had been through this process, similar experiences made a real difference. It helped us feel less alone during such a frightening and unfamiliar time.

Elijah underwent chemotherapy followed by his bone marrow transplant. He is currently battling GVHD and is receiving treatment with the ECP machine, alongside steroids to help manage it.

Everyone on Ward 3 has been absolutely amazing with both Elijah and our family. Nothing has ever been too much trouble. Their support, kindness, and constant reassurance have meant more to us than we could ever put into words. We will never forget everything they have done for us.